African health leaders have launched the Imara Sickle Cell Framework to improve coordinated diagnosis, treatment and lifelong care for patients across multiple countries.

African health leaders and partners have launched the Imara Sickle Cell Framework, a regional initiative designed to strengthen sickle cell disease care by improving how diagnosis, treatment and long-term management are delivered within national health systems across Africa.

Sickle cell disease remains one of the continent’s most pressing inherited blood disorders, with recent estimates indicating Africa accounts for around 80% of the global burden and hundreds of thousands of affected births each year. Despite expanded screening programmes and growing awareness, many health systems continue to face fragmented care pathways, delayed diagnosis and inconsistent follow-up. The Imara framework aims to address these gaps by focusing on service integration rather than policy development alone.

Rather than introducing new clinical guidelines, the initiative is designed to support implementation across the full patient journey. This includes linking newborn screening, diagnostic services, treatment access, referral systems and long-term monitoring into a more coordinated model of care. Health leaders involved in the programme say the emphasis is on practical delivery within existing national systems.

Dr Chris Baryomunsi, minister of health of Uganda, highlighted the importance of continuity of care for patients beyond diagnosis. “Families need support beyond diagnosis, including regular treatment and follow-up care close to home,” he said: “This initiative supports our commitment to improving survival and quality of life for children living with sickle cell disease and strengthening access to care across the country.”

In Kenya, officials pointed to the need to connect existing services more effectively. Dr Ouma Oluga, principal secretary, State Department for Medical Services, ministry of health, said: “Through the Social Health Authority, we are strengthening access to diagnosis, treatment and safe blood. The Imara Framework helps connect these services into a more coordinated system of care so that patients receive the support they need throughout their lives.”

The framework is currently being introduced in Uganda, Kenya and Côte d’Ivoire as an adaptable model that can be tailored to local health systems while maintaining a shared focus on continuity of care. The approach is intended to reduce fragmentation, particularly during the transition from early diagnosis to lifelong disease management, which is often where patients are lost to follow-up.

Mario Ottiglio, Secretariat Lead of the World Coalition on Sickle Cell Disease, said the initiative provides a practical route from policy to delivery. “Our coalition supports any effort that fosters government commitment, brings alignment and reduces fragmentation in sickle cell care. Imara offers a practical blueprint to turn these commitments into care that reaches patients,” he said.

The framework also aligns with wider efforts led by African governments, Africa CDC and the World Health Organization to strengthen early detection, improve access to essential treatments and build more resilient health systems for non-communicable diseases. While implementation is still in its early stages, stakeholders say the focus now is on ensuring that improved policy attention translates into consistent, long-term care for patients.

As countries begin rollout, the Imara Sickle Cell Framework is being positioned as a coordination tool aimed at closing persistent gaps in care delivery rather than replacing existing national programmes.